Teetering On a Cliff Edge: Transitioning Between Paediatric and Adult Hospice Services
Hospice Care; Adult; Child; clinical article; conference abstract; controlled study; conversation; Female; Hospice; Human; human experiment; Male; Pediatric; psychological well-being; Scotland; social care; trust; Wales; wellbeing; young adult
Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for all aspects of care. Many young adults and their families feel that there is nothing for them on leaving paediatric services and that they teeter on a 'cliff edge' with no hope for the future. Without a robust process of transition, the young adults' physical and mental wellbeing may be negatively impacted upon and yet the transition of young adults with complex conditions is not currently a health and social care priority. A pathway Identifying that there was a need to prioritise transition, Children's Hospices Across Scotland (CHAS) and The Prince & Princess of Wales Hospice (PPWH) worked collaboratively to pilot a Transition Pathway. This involved the development of a categorisation template for the transition caseload with subsequent identification of 12 young adults aged between 19 and 20, all of whom have a non-malignant diagnosis. Over an 18-month period, 4 young adults have fully moved to the adult hospice, 4 continue to remain on both caseloads, 3 have been discharged directly from CHAS with no adult hospice input, and 1 has died. Conclusions Focus groups for the young adults/families to share their experience of the pilot are planned to enable a full evaluation. However, ahead of these conversations it is recognised that collaborative working is essential to ensure a robust joint approach to transition, supported by: information sharing regarding the differences in services offered (and thereby demystifying what an adult hospice is); open conversation to develop a foundation of trust between the young adult/families and the health care professionals; and the development of an individualised 'at their pace' transition plan to support the health and wellbeing of the young adult and their families moving forward.
Laidlaw S; Wylie F; O'Connor J; Rahman F
BMJ Supportive and Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/spcare-2022-HUNC.63" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.63</a>
I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child
child; England; female; male; adult; human; Scotland; home care; Wales; patient care; article; controlled study; interview; preschool child; human experiment; wellbeing; conceptual framework; adolescent; thinking; decision making; father; mother; thematic analysis; heat; disabled person; chronic patient; biotechnology; regeneration
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology-dependent child (aged 5-25years) living in England, Scotland and Wales and David Seamon's five concepts of at-homeness (appropriation, at-easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta-theme of 'Home needs to be a home for all family members' and the three key themes: (1) 'You just get told' and 'you're not involved'; (2) It's just the 'cheapest', 'quickest', 'short-term' approach; (3) Having 'control' and 'thinking things through.' The need to involve parents in decision-making about adaptations that are made to their home (family-informed design) is clear, not only from a cost-saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well-being and feelings of at-homeness for the entire family. Copyright © 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.
Mitchell TK; Bray L; Blake L; Dickinson A; Carter B
Health and social care in the community
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/hsc.13870" target="_blank" rel="noreferrer noopener">10.1111/hsc.13870</a>
A Virtual Children's Hospice in Response to COVID-19: The Scottish Experience
Child; Coronavirus Infections – Therapy; Disease Outbreaks; Hospice Care – Methods; Hospices; Pneumonia; Scales; Scotland; Telemedicine – Methods; Viral – Therapy
This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the entire of Scotland, and we describe their experience offering pediatric telehospice. CHAS had strategically planned to implement a telehospice program, but COVID-19 accelerated the process. The organization evaluated its pediatric clinical and wrap-around hospice services and rapidly migrated them to a virtual environment. They creatively added new services to meet the unique needs of the entire family, who were caring for a child at end of life during COVID-19. CHAS's experience highlights the planning and implementing processes of telehospice with key lessons learned, while acknowledging the challenges inherent in using technology to deliver hospice care.
Ellis K; Lindley L C
Journal of Pain & Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.05.011</a>
Integrating palliative care into the community: the role of hospices and schools
article; bereavement support; capacity building; child; curriculum; female; hospice care; human; human experiment; male; palliative therapy; primary school; public health; Scotland
OBJECTIVES: Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences.
Paul S; Cree V E; Murray S A
BMJ Supportive & Palliative Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2015-001092" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2015-001092</a>
Turning Water into Wine: A New Community Pharmacy Workforce Delivering Paediatric Palliative Care Services Across Scotland
infant; hospice; nursing theory; heart; palliative therapy; major clinical study; funding; conference abstract; human; child; health care delivery; pharmacy; Scotland; water; wine; workforce; 7732-18-5 (water); community pharmacist; stakeholder engagement; summer
Background: A ground breaking paediatric palliative care study in Scotland in 2015 identified that 15,400 babies, children and young people (BCYP) with life-limiting conditions required input from palliative care services, significantly higher than previously thought. Innovative and transformational approaches to palliative care need to be investigated if services are to meet demand. To this end, a Paediatric Palliative Care Community Pharmacy Network was conceptualised to deliver medicines optimisation to BCYP and improve access to specialist palliative care medication thereby improving patient outcomes. This pioneering new model of care unlocks the clinical capacity of community pharmacists and capitalises on their unique reach across Scotland to deliver palliative care services deep into the heart of all communities. Furthermore, this shift from the traditional medical and nursing models of palliative care will provide sustainable and affordable services and reduce the burden on the already stretched hospital and hospice services.
McCusker K
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.188" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.188</a>
Birth weight percentile and the risk of term perinatal death
Female; Humans; infant; Male; retrospective studies; Young Adult; Pregnancy; Adult; cause of death; Risk Assessment; Birth Weight; Stillbirth; Perinatal Mortality; Scotland; Newborn; Smoking
OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in Scotland between 1992 and 2008 (n=784,576), excluding perinatal deaths ascribed to congenital anomaly. RESULTS: There were 1,700 perinatal deaths in the cohort, which were not the result of congenital anomaly (21.7/10,000 women at term). We observed a reversed J-shaped association between birth weight percentile and the risk of antepartum stillbirth in all women, but the associations significantly differed (P<.001) according to smoking status. The highest risk (adjusted odds ratio referent to 21st-80th percentile, 95% confidence interval) among nonsmokers was for birth weight third or less percentile (10.5, 8.2-13.3), but there were also positive associations for birth weight percentiles 4th-10th (3.8, 3.0-4.8), 11th-20th (1.9, 1.5-2.4), and 98th-100th (1.8, 1.3-2.4). Among smokers, the associations with being small were weaker and the associations with being large were stronger. We also observed a reversed J-shaped association between birth weight percentile and the risk of delivery-related perinatal death (ie, intrapartum stillbirth or neonatal death), but there was no interaction with smoking. The highest risk was for birth weight greater than the 97th percentile (2.3, 1.6-3.3), but there were also associations with third or less percentile (2.1, 1.4-3.1), 4th-10th (1.8, 1.4-2.4), and 11th-20th (1.5, 1.2-2.0). Analysis of the attributable fraction indicated that approximately one in three antepartum stillbirths and one in six delivery-related deaths at term could be related to birth weight percentile outside the range 21st-97th percentile. CONCLUSION: Effective detection of variation in fetal size at term has potential as a screening test for the risk of perinatal death. LEVEL OF EVIDENCE: II.
2014-08
Moraitis AA; Wood AM; Fleming M; Smith GCS
Obstetrics And Gynecology
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/AOG.0000000000000388" target="_blank" rel="noreferrer">10.1097/AOG.0000000000000388</a>
Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care
Humans; Attitude of Health Personnel; Health Services Accessibility; Health Services Needs and Demand; Qualitative Research; Focus Groups; Needs Assessment; Respite Care; Scotland; Charting the Territory; Family/psychology; Research/organization & administration; Palliative Care/organization & administration/standards; Hospice Care/organization & administration/standards; Terminal Care/organization & administration/psychology/standards
The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using hospice services (n = 5), four focus groups with hospice staff and volunteers (n = 44) and telephone interviews with professionals associated with the hospice (n = 18). Fourteen broad themes emerged following thematic content and interpretive analysis of the interview data. Some of the research themes were specific to certain stakeholder groups, whereas other themes were identified unanimously across all the stakeholder groups as being priority areas for future research. Increasing awareness of and improving access to children's hospice care, hospice and respite care needs of young people, community/home care and issues related to supporting the wider family arose, independently, in all three stakeholder groups as being priority topics for future research. In conclusion, a greater evidence base is required in the field of children's palliative care and the topics researched should be identified and led by those most closely involved in the hospices. Engaging families and care providers in the process of identifying research priorities resulted in the development of an extensive research agenda, which will contribute to quality hospice care for children and families.
Malcolm C; Forbat L; Knighting K; Kearney N
Palliative Medicine
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0269216308098214" target="_blank" rel="noreferrer">10.1177/0269216308098214</a>
Prioritization of future research topics for children's hospice care by its key stakeholders: a Delphi study
Child; Humans; Terminally Ill; Family; Attitude of Health Personnel; Focus Groups; Needs Assessment; Delphi Technique; Scotland; adolescent; Palliative Care/organization & administration; Charting the Territory; Research/organization & administration; Hospice Care/organization & administration
The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research priorities for children's hospice care. In the qualitative Round 1, interviews with families (n = 5), linked professionals (n = 18) and focus groups with hospice staff and volunteers (n = 44) led to the generation of 56 research topics categorised within 14 broad themes. To give a larger number of stakeholders (n = 621) (including families n = 293; hospice staff/volunteers n = 216 and professionals n = 112) the opportunity to rate the importance of each research topic and seek group consensus on the future research priorities for children's hospice care, subsequent Rounds 2 and 3 involved the use of postal questionnaires. Response rates to questionnaires were 44% in Round 2 (274/621) and 83% in Round 3 (204/247). Participants prioritized research topics relating to 1) hospice and respite care needs of young people (aged 16 +), 2) pain and symptom management and 3) bereavement and end-of-life care. There was wide acknowledgement by those took part in the process of the difficulty in rating the topics, and emphasis on the fact that all of the topics raised during the project are of high importance and merit further research. The current salient issues perceived by key stakeholders as being the research priorities for children's hospice care were identified. Addressing these priority topics for research would further contribute to the development of a much needed evidence base in children's hospice and palliative care research and optimise the delivery of children's hospice services that are underpinned by valid and robust research.
Malcolm C; Knighting K; Forbat L; Kearney N
Palliative Medicine
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0269216309104061" target="_blank" rel="noreferrer">10.1177/0269216309104061</a>
Retaining young people in a longitudinal sexual health survey: a trial of strategies to maintain participation
Female; Humans; Male; Logistic Models; Questionnaires; Longitudinal Studies; Biomedical Research; Motivation; Scotland; adolescent; Health Surveys; Sexuality; Reward
BACKGROUND: There is an increasing trend towards lower participation in questionnaire surveys. This reduces representativeness, increases costs and introduces particular challenges to longitudinal surveys, as researchers have to use complex statistical techniques which attempt to address attrition. This paper describes a trial of incentives to retain longitudinal survey cohorts from ages 16 to 20, to question them on the sensitive topic of sexual health. METHODS: A longitudinal survey was conducted with 8,430 eligible pupils from two sequential year groups from 25 Scottish schools. Wave 1 (14 years) and Wave 2 (16 years) were conducted largely within schools. For Wave 3 (18 years), when everyone had left school, the sample was split into 4 groups that were balanced across predictors of survey participation: 1) no incentive; 2) chance of winning one of twenty-five vouchers worth 20 pounds; 3) chance of winning one 500 pounds voucher; 4) a definite reward of a 10 pounds voucher sent on receipt of their completed questionnaire. Outcomes were participation at Wave 3 and two years later at Wave 4. Analysis used logistic regression and adjusted for clustering at school level. RESULTS: The only condition that had a significant and beneficial impact for pupils was to offer a definite reward for participation (Group 4). Forty-one percent of Group 4 participated in Wave 3 versus 27% or less for Groups 1 to 3. At Wave 4, 35% of Group 4 took part versus 25% or less for the other groups. Similarly, 22% of Group 4 participated in all four Waves of the longitudinal study, whereas for the other three groups it was 16% or less that participated in full. CONCLUSIONS: The best strategy for retaining all groups of pupils and one that improved retention at both age 18 and age 20 was to offer a definite reward for participation. This is expensive, however, given the many benefits of retaining a longitudinal sample, we recommend inclusion of this as a research cost for cohort and other repeat-contact studies.
2010
Henderson M; Wight D; Nixon C; Hart G
Bmc Medical Research Methodology
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1186/1471-2288-10-9" target="_blank" rel="noreferrer">10.1186/1471-2288-10-9</a>
Survival in trisomy 13 and trisomy 18 cases ascertained from population based registers.
Humans; infant; Trisomy; Survival Analysis; Longitudinal Studies; Scotland; Newborn; Chromosomes; Human; Pair 18/genetics; Pair 13/genetics; Registries/statistics & numerical data
2002
Brewer CM; Holloway SH; Stone DH; Carothers AD; FitzPatrick DR
Journal Of Medical Genetics
2002
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Journal Article
<a href="http://doi.org/10.1136/jmg.39.9.e54" target="_blank" rel="noreferrer">10.1136/jmg.39.9.e54</a>
Evaluating Palliative Care Training Experiences Of Paediatric Trainees Across Scotland
Palliative Therapy; Scotland; Student; Analgesia; Child; Consensus Development; Exposure; Family Study; Female; Grief; Human; Human Experiment; Male; Nausea And Vomiting; Recipient; Simulation Training; Sudden Infant Death Syndrome; Symptom; Teaching
Aim To determine the experience of training in paediatric palliative medicine (PPM) among trainees, to identify how well trainees were able to meet RCPCH competences in PPM, and to explore educational opportunities desired by trainees to enhance current PPM training. Methods A semi-structured survey, containing 22 questions, was sent by email to all 4 Paediatric Training programme directors in Scotland (North, East, South East and West) for onward distribution to paediatric trainees (ST1-ST8) between October 2015 and October 2016. Questions explored PPM teaching experience, trainees confidence in achieving RCPCH palliative care competences, and identification additional training desired. Results 60 (54%) recipients responded; 27 (45%) level one; 13 (22%) level two, and 20 (33%) level three. 50 (81%) respondents had undertaken all their paediatric training in Scotland. The majority of trainees had limited exposure to dedicated PPM training: 26 (42%) stated they had no training and 25 (40%) had completed 1-2 teaching sessions in PPM. Grading their ability to meetthe RCPCH palliative care competences 35 (63%) felt confident in the recognition of loss and grief and their effects 42 (70%) in understanding the need to respect the wishes of the child and family, but only 30 (50%) in their knowledge of the guidelines on withholding and withdrawing treatment and the local and national guidance on sudden infant death (SUDE). Regarding symptom management and recognition of the palliative phase of a patient journey, respondents were neutral or in disagreement that they had gained sufficient experience to be clinical competent in these fields (70% and 58% respectively). Trainees identified numerous areas in which they desired additional training: 85% on guidance around withholding and withdrawing treatment; 68% on anticipatory care planning; 67% on pain management and 55% on management of nausea and vomiting. Trainees responded positively when asked if simulation training would enhance PPM training, particularly around breaking bad news (86%), and anticipatory care planning and limitations of treatment (81%). Conclusion Paediatric trainees have limited exposure to designated PPM training in Scotland and identified that this lack of training opportunities negatively impacts on their clinical knowledge and competence. Training and education is strongly desired in a number of areas with simulation being identified as a useful method of delivering training when there is inadequate clinical exposure to PPM.
Downie J; Bland R M
Archives Of Disease In Childhood
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1136/archdischild-2017-313087.504
Integrating Palliative Care Into School Communities
Palliative Therapy; Bereavement; Child; Controlled Study; Curriculum; Hospice; Hospices; Human; Human Experiment; Information Processing; Interview; Model; Only Child; Palliative Care; Primary School; School Child; Scotland; Skill; Staff; Terminal Care
Background: Historically, the social aspects of death, dying and bereavement have been given insufficient attention by palliative care services; this has had an adverse effect on how patients and their families experience end-of-life and bereavement. New approaches to palliative care, which forefront palliative care as a public health issue, have brought impetus to this aspect of service provision by seeking to develop communities that support death, dying and bereavement. A survey found that most hospices in the UK regard this approach as a priority and work with schools has been identified as a key area of innovation within this. Practice that engages schools and children on issues concerning end-of-life care is, however, under-developed and under-documented, and there is little evidence that explores the role of hospices in working with schools. Aim: To extend the work of a hospice to engage with local primary schools to promote education and support around end-of-life and bereavement experiences. Method: An action research methodology was used to explore the potential of hospices working with school communities. The research was conducted in one hospice and across two primary schools in Scotland. Participants included children, aged nine to twelve, parents and school and hospice staff, who participated in a series of interviews and focus groups to identify better practice and engage in change processes. Results: Seven innovations were identified and piloted that were of relevance to the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested. Conclusions: This research informs the ways that hospices might improve their community engagement activities to enable school communities to develop relevant skills, attitudes and support around end-of-life and bereavement experiences for their children. This requires an extension of normal hospice services to develop capacity within school communities.
Paul S; Cree V; Murray S
Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
https://doi.org/10.1177/0269216316631462
How Many Children And Young People With Life-limiting Conditions Are Clinically Unstable? A National Data Linkage Study
Patterns; Prevalence; Palliative Care; Pediatrics; Australian Casemix Classification; England; Health Service; Ethnicity; Care And Treatment; Patient Outcomes; Scotland; Diseases; Management; Intensive Care Units; Registration; Age; Consortia; Diseases; Minority & Ethnic Groups; Hospice Care; Ethnicity; Quality; Medical Research; Patient Admissions; Studies; Councils; College Admissions; Audits; Datasets; Palliative Care; Hospitals
End-of-life Care; Life-limiting Conditions; Picanet; Palliative Care; Routine data
Objective To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0–25 years in Scotland with life-limiting conditions (LLCs).
Design National cohort of CYP with LLCs using linked routinely collected healthcare data.
Setting Scotland.
Patients 20 436 CYP identified as having LLCs and resident in Scotland between 1 April 2009 and 31 March 2014.
Main outcome Clinical stage based on emergency inpatient and intensive care unit admissions and date of death.
Results Over 2200 CYP with LLCs in Scotland were unstable, deteriorating or dying in each year. Compared with 1-year-olds to 5-year-olds, children under 1 year of age had the highest risk of instability (OR 6.4, 95% CI 5.7 to 7.1); all older age groups had lower risk. Girls were more likely to be unstable than boys (OR 1.15, 95% CI 1.06 to 1.24). CYP of South Asian (OR 1.61, 95% CI 1.28 to 2.01), Black (OR 1.58, 95% CI 1.04 to 2.41) and Other (OR 1.33, 95% CI 1.02 to 1.74) ethnicity were more likely to experience instability than White CYP. Deprivation was not a significant predictor of instability. Compared with congenital abnormalities, CYP with most other primary diagnoses had a higher risk of instability; only CYP with a primary perinatal diagnosis had significantly lower risk (OR 0.23, 95% CI 0.19 to 0.29).
Conclusions The large number of CYP with LLCs who are unstable, deteriorating or dying may benefit from input from specialist paediatric palliative care. The age group under 1 and CYP of South Asian, Black and Other ethnicities should be priority groups.
Stuart Jarvis; Roger C Parslow; Pat Carragher; Bryony Beresford; Lorna K Fraser
Archives Of Disease In Childhood
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
http://dx.doi.org/10.1136/archdischild-2016-310800